A Study of Abandonment of Treatment in Children with Retinoblastoma in Lucknow

As some of you know that I am continually fascinated by the phenomenon of abandonment of treatment which occurs in children with cancer in developing countries including India. It is a major cause of treatment failure and as stakeholders in the management of children with cancer we have to address is it head on if we want to improve their outlook. I previously posted on this in the blog (see link).

There definitely has been more awareness in the last few years and gradually we are seeing some solutions across the world. One of the initial success stories came from the twinning program between St. Jude Children’s Research Hospital in Memphis USA and Instituto Materno Infantil de Pernambuco in Recife, Brazil which has acted as a template for the rest of the world (see link). Hearteningly, there are now stories of success in India, one of which is from Tata Memorial Hospital I covered in my blog earlier this month (see link).

The other is a recent study on children with retinoblastoma diagnosed from March 2008 to Aug 2011 at King George's Medical University and treated under the care of Dr Archana Kumar.Not only did they study the occurrence of abandonment, they also employed a social worker and a data entry operator to trace those patients who defaulted appointments using phones or postal mail or both. I congratulate the team at KGMU and would like to share with you some of their important findings.

• Fifty (49.50%) of 101 children registered for treatment abandoned therapy 
• There was an astonishing decline in abandonment rates  from 71% in 2008-9 to 60% in  2009-10 to 39% in 2010–11 and 17% in first half of 2011–12.
• Abandonment of therapy was significantly higher in children from rural 
• background. A larger proportion of children from rural background belonged to lower socio-economic class and had 
• to travel longer distances often using multiple modes of transport.
• Among various reasons cited for abandonment - financial constraints and unwillingness to enucleate were the most common.

What is also interesting is the efforts made to track these patients and the outcome of those efforts. Only 88 (31%) of the 282 calls made to trace 42 families (an astonishing average of 6.7 calls per family) were answered. The others were wither connected but not answered, or phone numbers were wrong or swiched off/not reachable. Only 1 of the 41 letters written to 23 families evoked a response, another two were returned due to wrong addresses. After all that intensive effort, only 12 children came back for retreatment after a median period of 6 months (range 5–32 months) and all but one had progressed and 6 of the 12 died! The astute team at KGMU quickly learned their lessons and they say "As soon as we realized that post-abandonment counselling was ineffective in improving compliance, we changed our strategy by intensifying the counselling at initial contact emphasising that regression of tumour following chemo-reduction in extraocular disease did not amount to cure and also highlighting that most of the children who had earlier abandoned therapy died of disease progression."

To me this is the message of the study - Abandonment of treatment leads to progression and death and early and intensive counselling is key. By the time they have defaulted, it is often too late.